Last week, Katie Wright wrote about the IACC meeting that ended early, cutting off a young man with autism named Alex and his mother Elizabeth from presenting their comments. (Katie's post is below the jump, as a reminder.) The committee required public comments be presented prior to the meeting. The photo is of Alex holding the mic, as his mom had prepped him, helped him wait for several hours and she made sure he got his chance, even if it was only to appear in front of an empty room; the participants having decided to leave early, before Alex had his chance. Here is Elizabeth's letter and in .pdf. Thank you, Elizabeth. And most of all, thank you Alex.

The following are the scheduled remarks for Elizabeth Emken, Vice President of Government Relations, Autism Speaks, for the July 15, 2009 IACC meeting:

Hello. I am Elizabeth Emken, I’m Vice President of Government Relations at Autism Speaks. This is my son, Alex Swartz. He has autism spectrum disorder.

We are here today to show the committee another example of a person living with autism. We all know that autism is a spectrum disorder, but in meetings like these, that are very orderly with scheduled speakers and tented name cards, the environment is best suited to those on the spectrum that can express themselves. Alex Swartz, my son, is on a different part of the spectrum—and he represents a significant number of individuals living with autism. Most individuals with autism cannot walk up to this microphone and tell you what’s on their minds. Most can’t talk about how they feel, and discuss their hopes and dreams with you. Many couldn’t be here, in this room, for more than a few moments.

Alex, do you want to say something into the microphone? (I will try to prompt him to give his name and age, and to say hello. He is not able to prepare or give structured remarks).

That’s really all Alex can share with you today. He can’t tell you how it is he came to be here today. He can’t explain his background, his education. He will not be going to college, getting a job, getting married, and he won’t be forming a 501c3 to promote his interests. Autism has left Alex profoundly disabled. Intensive behavioral therapy, provided beginning when Alex was 4 years old, has, however, enabled him to travel here today from California by plane, and sit in this meeting for quite a while, more or less quietly. Alex is happy, he loves school, he loves to travel, and he misses his family when one or more of us are away from home.

But if Alex could say this to you today, I am confident he would ask you for your help in curing his autism. Yes, curing his autism. I spent many years on the Board of Directors of Cure Autism Now, and I’m fortunate to currently run the Government Relations department at Autism Speaks. I do believe that autism is a disorder that should be cured—an affliction that robs individuals of their ability to lead a productive life. It robs most of them of their ability to address you here today. It robs them of their liberty, and their ability to pursue their own happiness. Autism, for a vast majority of those that struggle with it every day, is the difference between a life of independence, and lifelong dependence.

I urge this committee to actively pursue the promotion of research into prevention, treatment, and ultimately a cure for autism. Thank you.

Sincerely,

Elizabeth EmkenVice President, Government Relations Autism Speaks

By Katie Wright

Alex wanted to wear a tie for the first time in his life. He was also wearing special new slacks and a blazer. Alex is a handsome young man severely affected by autism. He and his mother Elizabeth, traveled all the way from CALIFORNIA to make their pre-approved comments at the public session of IACC.

Elizabeth and other Moms in attendance had to submit pre-approved questions to IACC in order to be allowed to make comments. OK, why the need to “pre-approve” comments? Are IACC meetings in danger of being crashed by strangers? Is this really such a hot ticket? Why can’t parents just sign up and be told what time to be there? Why is IACC censoring public comment? Who is IACC charged with serving? Uninformed bureaucrats who do not really care about our kids or is IACC there is serve the autism community?

Elizabeth had explained to Alex that they were going to talk at an important meeting and Alex even rehearsed speaking into a microphone. Because no seriously affected autistic person can sit in silence for the 6 hour duration of the meeting, Elizabeth and Alex had to take many walking breaks. They knew it would be their turn to speak at 3:30. 3:30 was also the published public comment time on the IACC agenda website.

As any Mom reading this knows, tremendous effort is required to time everything just right in a formal situation. Bathroom breaks, snacks, water and walking breaks were all carefully orchestrated in order to be at the IACC podium, ready to go at precisely 3:30. Elizabeth and Alex did their part.

Apparently, Tom and some others were in a rush to wrap it up. I suppose they had more important things to do. Rather than sticking to the schedule (a fairly important issue anyone who knows anything about autism should understand) Tom decided to announce time for public comment at 2. Of course all the Moms and their severely affected sons were not in the conference room then, so Tom and Della, IACC’s assistant, decided to end the meeting 2 hours early. Things are going so great with the autism- why continue the meeting? What could there possibly be to talk about? Shortly thereafter Elizabeth, Alex and other ASD family members walked into a nearly empty committee room.

Della was still there and informed the families that the meeting was over, public comment was announced early, they missed it, too bad. Della told the families that they should have been seated and ready to go anytime over the course of the 6 hour meeting! So, rather than apologizing for shafting autism families, this was really Elizabeth’s fault? Does Della even know anything at all about autism? Are she and Tom remotely aware of how utterly impossible it is to ask a severely affected ASD teen to sit silently for 6 hours? Do they care? What was the purpose of the published schedule if it was only going to be tossed aside when it suited Insel? The greatest irony is that these mothers brought their severely affected children so the committee, who are overwhelmingly bureaucrats, not parents, could see what a struggle it can be for these children to function.

Elizabeth did not want the day ruined for Alex. He had worked so hard to be ready. Elizabeth led Alex to the microphone so he finally make his comments- to an empty room. And then she clapped for her son.

Postscipt

To his credit Tom Insel did telephone Elizabeth and apologize.

Elizabeth graciously accepted his apology and spoke to Insel at length about the deficiencies within IACC. Insel listened as Elizabeth stated there is insufficient parent representation on the panel and most committee members appear wholly unfamiliar with issues affecting kids on the severe end of the spectrum. The committee operates with no sense of urgency and seems, at best, indifferent to public input. Insel promised to remedy these issues, specifically by placing this issue on the agenda of the next meeting and never again canceling the public comment segment. Insel is also seeking to have Katherine Sebelius attend the next IACC, so she too may recognize the urgency of the situation. It is in everyone’s interests for Insel to follow through with these promises. Let’s hope that is what happens.

Thank you Elizabeth and Katie...Thank you Alex for braving your way across the country in a plane, to speak for yourself, my son and for all of our kids.

Insel should be ashamed of himself but from this incident and so many others it's clear our leaders and those who hold the purse strings for research still have no clue of what autism is.

Possibly it's time to make these leaders/research deciders come to the children/teens with autism in their own settings. Accompany them to the neurolgist and hosptials for EEGs, blood tests, etc and to their schools and home settings. We often have to use visuals to get our kids to understand what we are saying, I think visuals may be what our government leaders need to start truly learning what the situation is. Let's see if it's that easy to ignore us, or not care, if we "show" them the reality in context.

I have hope that there will be a place in hell for the people who minimize our children. Shame is not a big enough word for what they did to your child.
A phone call saying sorry isn't enough.
Actions speak louder than words.
We all need to spread this story as far as we can. These people are paid by us! They are not entitled to dismiss us.

Be sure to click on Alex's picture so you can see his winning smile close up! Thank you so much Elizabeth for sharing the moment that almost was, and for your stirring words. Alex is making a difference for people struggling with autism - even if it's not in the way you originally planned.

Yesterday the lawyer we hired to help get SSI last November called and said our son's case was coming up soon and she asked were there any new developments?

I said that I had tracked down the psych-evaluation that the govenment had set up for us and had mailed it to her. I guess she has been busy so I told her it said "sheltered workshop".

She exclaimed," Sheltered workshop, why that is severe!" She has set up another meeting with us and kindly told me that she would just talk to my husband and me and that my son did not have to come.

I don't think of my son as severe. I had a heavy feeling in my chest all day.

Last night I woke up from a dream. I was knitting and cheering as some people were being driven in carts to their execution.

What happened to my son has been 23 years ago. It is not something that people get over. I don't see how they are going to get away with this bunch of crap for much longer?

AND Then I think of other people out there that just have not figured it out. I think of the room full of parents at one of the autism meetings I went to long ago that shook their heads vigoursly, No when I mentioned vaccines. YET, all their little bitty kids walked on their toes while the older kids had flat feet! All sick, all with speech problems, all- just like my kid!

Its Just like John Trovalta's blaming carpet cleaner. A man that could have had a voice and it was wasted!

It's just like the austism meeting in Maine. I heard it hear on this web-site! It was set up perfect. I mean perfect! The speech about stomach problems, the next speech on environment is the cause (even put in the fact that she was getting grants to study the environmental factors) and then the third speech by a neurologist that said his daughter reacted to the vaccines and it messed up her mitochondia. He had won his case in the vaccine court!

Then after the meeting during the questions what do we hear. Some unknown woman not asking a question but giving a speech on about ever junk science thing going on: phalates,plastics, sodium bis-what-ever in potato chips,mercury from coal fire flowing in from the bottom states into Maine because they are the tail pipe of the U.S. I don't think I can get that stupid comment out of my head! At least the next parent that ask the question on vibration from windmills looked embarassed and nervous!

Thank you Alex and Elizabeth for attending for all of the people affected by autism.

Thank you Katie for shining the light right where it matters. Ouch ... but necessary!

The committee should take care to not seem oblivious to civil rights where medical recognition, access to treatment, are concerned regarding autism. Specific measures for direct services should be on an individual level (rather than program level) and should be required for any funding. Sub-groups should be identified (Dr. Herbert), as the data can be skewed without that attention to detail - causing effective treatments to not become or remain available. The committee should be focused on not creating an administrative, top heavy approach and ensure effective delivery of appropriate and meaningful direct services and clinical service access. The response of an individual to treatment is an important focus for programs/research/services.

Bravo Elizabeth - Your letter brought bitter tears to my eyes because your story hit so close to home. Bravo to wonderful Alex for his achievements in travelling and preparing to speak to the IACC! I can only dream of my son being so strong and skilled one day. My thanks to you both for your efforts on behalf of all children like ours.